[Sandy L]

Terri

We are talking about going up north that week. I try to go every 6 to 8 weeks so that I do not miss that much. My grandchildren are growing up too fast. Justin is 2 1/2 and Jason is 6 months.

I do live close but that does not mean that I could keep up with you. My walking skills need to be fine tuned. Maybe next year. Please ask me again.

I called the nutrionist and he was operated on ( knee surgery) and will call me when he is better for a phone consult. We might get to see him in August since we will be up North.

Your Hemo Doctor is not on my plan. We are going to our doctor tomorrow and I am going to ask a lot of questions. If I am not pleased then we will go to your doctor for a consultation visit – pay the fee for no insurance $165 – and then ask him to reccommend someone on our plan. We have no coverage if the doctor is out of plan. (bummer)

I will keep you informed.

[Sandy L]

Whatever you are doing, keep up the good work.
We love good news – it keeps us hoping.

[Sandy L]

Hi Kathryn,

Sorry about your loss. Hold on to all your wonderful memories. I hope you won’t find it too painful to keep up with this group. I look forward to your posts – you always give so much support and wisdom to others.

Keeping you in my prayers.

[Sandy L]

Hi Suzanne,

Thank you for the reply. He has not had another BMB and is not looking forward to another one so soon. We go to the doctor in two weeks and they will probably suggest that. How often is the BMB done? For some reason I think we are not using the right doctor. When we go to him this time, I will ask the hard questions that we have been avoiding bringing up.

We did go to Moffit in Tampa but the doctor told us not to contact them unitl the red count went down. We are also not covered at that hospital so if we go back there again we have to foot the bill. Mike was laid off and we were on Cobra when he found out the he had MDS. It has been impossible to get the insurance we need but we are still working on it and we are hopeful.

I am having trouble using this site. I do hope that you get this message, and that I am posting to the site.

[Sandy L]

Hi Everyone,
I am new to this group. I have been following the AML list for over a year now but never posted. My husband Mike was dx 3/04 with MDS – RAEB. We went to Tampa and we were told that when his red blod cells drop significantly we should contact them for a possible clinical trial. Until then just monitor the changes. The platelets are dropping. He had a bad cold/flu /temp and since then the counts are going lower every other week. The doctor mentioned Vidaza, We are reading up on this drug and do not know if this is the right time to enter into Chemo with no other symtoms. Has anyone else had to make that decision and what guidelines did you use to help you decide?

Thanking you in advance for your help.

Best regards,

[Author]

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